Barriers to Care for Adults With Sickle Cell Disease: A Qualitative Descriptive Study

We sought to understand barriers to care among adults with sickle cell disease (SCD) within our healthcare system.

This qualitative descriptive study was conducted as part of a needs and assets assessment in preparation for the development of an adult sickle cell clinic.

We conducted key informant interviews (n = 19) and a focus group (n = 10) with administrators, patients, caregivers and healthcare providers (HCPs). Audio recordings were transcribed verbatim, coded inductively and analysed thematically.

Four themes emerged: (1) People with SCD identified structural barriers, such as the lack of individualised care, access barriers to medical, community, adult-specific resources and inadequate transitional care support from paediatric to adult care. (2) HCP-related barriers, which included a lack of understanding and education, communication gaps and access barriers to finding HCPs trained in caring for people with SCD. (3) Discrimination biases by HCPs and outright prejudice towards people with SCD. (4) Financial barriers such as lack of incentives for comprehensive SCD centres and HCPs and funding reimbursement. We found that adult people with SCD had unique challenges. Interestingly, patients had perspectives similar to HCPs, while administrators were more focused on the financial barriers that affect continuity of care.

These barriers require a concerted and multidisciplinary effort from patients, caregivers, HCPs, administrators and the community.

Patients, caregivers and community members played a crucial role in this study by sharing their lived experiences and perspectives on barriers to care for adults with SCD.